#shuntlife

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March 1st has become an anniversary in our household that will be celebrated for years to come. This marked the 1 year of Shea’s brain surgery and placemet of his vp shunt for hydrocephalus. Although still hard to even write the words brain surgery when referring to our son, this March 1st came in celebration, joy, and empowerment. Our little dude made it without any complications or shunt failures for his first year after all we heard about after placement of the shunt was that odds are high his first failure would occur within a years time. You better believe we celebrated this 1 year milestone with a great sense of pride. We are making this #shuntlife work.

A lot has occurred since we last posted. For example as we write this, Shea is back in his second surgery (and 3rd time of anesthesia) of his short 14 month life to correct strabismus associated with his right eye. This is routine surgery however no surgery feels routine, especially when your child is 14 months. It is a strange feeling though as we sit in the waiting room; the youngest couple in the room; the couple who has lived this before. We have become veterans in a world we wish we knew nothing about.

Surgery should last about an hour and a half. Recovery we have been told is pretty routine as he should take about 24 hours to get through simply the reprocussions of surgery. Outside of the first 24 hours he will not be allowed to enter the pool or ocean for 3 weeks… Haha, a daunting task for the Berger family. We got this!

Finally I want to take a moment and give some love to my incredible wife for not only being there for Shea and dad but she has also championed one of the toughest hurdles in this process: health insurance. Shea now has 7 specialists (neurosurgeon, GI, allergist, geneticist, ophthalmologist, retinal specialist, audiologist) on top of his primary care physician that are all seen pretty much on a quarterly basis (not to mention the optician and infant stimulation that are seen weekly). Take out the authorizations required to get into each specialist, coordination of time and scheduling is a full time job (yet she has one of those, too).  Shea dude receives great care and that does not happen by chance. Many people (you know who you are) have been very kind with their time and love in helping us through this. However none of this comes together without Erin’s relentless pursuit of wanting what is best for Shea. Thank you to my bride.

As always thank you for your love and prayers.

The Berger Family

 

#shuntlife

hope

imageThe past month has brought new challenges, yet an even greater sense of hope.

We attended our first hydrocephalus walk which was so much more than we had anticipated. We had the pleasure of meeting incredible families who immediately extended their support. Some of these families have been through just as many surgeries as birthdays (by age 7 and 9). It truly was something else to be surrounded by families who not only have been in our shoes but more importantly, are passionately doing everything they know how to work towards a cure.

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The last few weeks have reminded us just how much hydrocephalus impacts our day to day routine. Shea had the expected flu symptoms but not much rhyme or reason to them. We go through the standard routine when this happens (i.e. play the symptoms out, if worse call RN and go from there). The first time this happened we did just that. I called the RN who thought in this case it was best to come in to see a pediatrician, who then could not definitively rule out shunt failure so off to the emergency room we went. Everything checked out great and we were discharged home in a few hours. Just three days later, different symptoms show up and we are back at the beginning. After going through the same motions, the pediatrician again cannot definitively rule out shunt failure and we end up back in the emergency room. This time they piled on more testing (CT of the head, shunt series X-rays, ultrasound guided IV (since Shea is “pudgy”) and blood work). We left exhausted but relieved that Shea was simply sick.

It never seems to end for our little man. The X-rays ordered in the emergency department alluded to a “bubbly mass” in his abdomen. We are again grateful for our pediatrician who wanted to confirm this was not significant and ordered an ultrasound which we completed today and…low and behold…was negative! It’s the little things. Today we got our first call that something was negative and it feels so good!

…and then there’s Shea’s dreamy blue eyes. After over six months of battling insurance companies for simply wanting the best care for Shea, we got in to see a pediatric retinal specialist at UCLA, Dr. Irena Tsui. There is nothing new to report but her explanations were calming and long awaited. We’ve known Seamus has macular atrophy in one eye but have been left with many unknowns. Up to this point, we’ve been led to believe the cause may have been due to a traumatic birth in which something ruptured in his eye (this has not been sitting well for this mama!).  Nothing is definitive, but Dr. Tsui suggested the macular atrophy appears more like scarring and to think of it as a birthmark. We remain hopeful that we will be able to continue following up with her (even if it’s means we’re up against insurance again!).

We are grateful for our health and support system . I’m particularly grateful for friends, family and co workers who understand priorities (Shea dude!!), Grammy who provides the best of the best for Shea in sickness and health, and Pieter who loves and builds us up.

Love and hugs.

Pieter, Erin and Seamus

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hope

walk it out

There is no question that Shea is thriving.  He pulls himself up, gets to where he wants to be and absolutely loves summertime.  He has swim lessons with Daddy weekly, and giggles with excitement at the beach.

He can now be spotted wearing his glasses and I’m sure it will come as no surprise to hear that he’s already stopped several strangers in their tracks. While he gets plenty of compliments about how adorable they look on him, there is definitely a shock factor to seeing a baby in glasses. We’ve gotten many questions about how in the world we knew a 6+ month old needed them in the first place.

We are grateful.  We are grateful Shea’s pediatrician ordered the initial head ultrasound. We are grateful his genetic work up was essentially negative, and we are grateful the work up included an ophthalmology appointment that has lead us to being proactive with his vision. The eyes were simply another incidental finding after the hydrocephalus (yet not related). Bottom line: Shea rocks his glasses and wins everyone over.

Aside from adjusting to some metal frames, it has been smooth sailing over the past couple of months for Seamus. We know our new normal consists of monthly eye visits and quarterly doctor’s appointments with our team of specialists, but it no longer seems overwhelming.  Now we have our eye on the future.

Pieter, Seamus and I will be participating in LA’s Hydrocephalus 5K in September. While there is no pressure to participate, you, our family and friends, have been our strength throughout this whirlwind and we would love to spend time with you. I attached the link below where you can register under our team, “Shea Dude”.

http://hawalk.kintera.org/losangeles/sheadude

Love and hugs.

Erin, Pieter and Seamus

walk it out

standing tall

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June. A big month. Appointment #1 with Dr. Bocian to review Shea’s blood work and full genetic make up. Appointment #2 with Dr. You, Pediatric Retina Specialist, to review any progression in Shea’s macular atrophy. Appointment #3 with Dr. Muhonen, Shea’s Neurosurgeon, to review Shea’s fluid levels in his brain. Appointment #4 with Dr. Mody, Shea’s Pediatrition, for his 6 month checkup. Appointment #5 with Dr. Whang, Ophthalmologist, where Shea will get prescribed his first pair of glasses. And finally, awaiting the scheduling of Appointment #6 with the Doheny Eye Institute to get a second opinion on Shea’s macular atrophy…

It’s exhausting just typing it out.

Currently we are 3/6 of the way there.

A lot was riding on our first appointment with Dr. Bocian. The blood work and gene testing would give us a very black and white answer if Shea’s hydrocephalus is linked to something larger such as a disease or syndrome. The testing would also help us better determine the cause of the hydrocephalus. Not wasting anytime in the appointment, Dr. Bocian allowed us to exhale as her first words were that everything came back negative. A big moment… In addition, we learned that the cause of the hydrocephalus was not due to an infection during pregnancy but rather diagnosed as idiopathic. The biggest fear for us has been the unknown. We left the room that day and for the first time since our journey began, our family was actually able to leave with some answers.

Days after Appointment #1, we found ourselves where it all began, in our neurosurgeon’s office. Dr. Muhonen could not have been more pleased with how Shea was progressing. An ultrasound showed that Shea’s fluids had reached completely normal levels. Dr. Muhonen kept commenting on how happy Shea was. And as we walked out sharing nothing but smiles, Dr. Muhonen throws out there “now you can have #2.” Haha in time….

Appointment #3, Dr. You dialated Shea’s eyes to see if there was any progression in his macular atrophy. As we hoped, nothing had progressed. We are still on track with glasses but fears of potential blindness in one eye were ruled out. Shea was still showing a difference between the vision in his two eyes but the notion of how early we are detecting everything left the room optimistic moving forward.

Dang, so far we are batting 3 for 3. On route for a big June…

Shea is the man. He is all dude. He wants to grab everything, eat anything, and stand up whenever he can. It’s crazy because everyone tells you how fast it goes, but Shea turned 6 months today. He has earned those 6 months and made the most of them.

Every night, we pray as a family together. It is the last thing we do before we place Shea in his crib. The last words we tell Shea before going to bed every night are to “no matter what, never stop smiling.” Dude is listening.

Lots of love and smiles,

The Berger Family

standing tall

what are the odds

Life is a game of odds and nothing is guaranteed. Leicester City just won the English Premiere League for the first time at 5,000-1 odds. For those of you who don’t speak soccer, that is the equivalent of a AAA baseball team coming up to the Major Leagues and winning the World Series. Those 5,000-1 odds are the same for finding Elvis alive. Shea’s odds of being born with hydrocephalus were 1,000-1. His odds of being required to have surgery and getting his shunt put in place stack up even higher. Currently we are awaiting test results that will tell us if Shea was born with conditions that are in the 10,000-1 range. We were lucky enough to get pregnant and even more lucky to welcome Shea screaming and crying into the world just over 4 months ago. At the end of the day, Shea is 1 of 1 and Erin and I would not change a single thing about him. Whether it is 1,000-1, 5,000-1, or 10,000-1, we will play those odds everyday of the week. Needless to say, I think that Shea was born to be a Leicester City fan.

We reached our 4+ month milestone, mom is back at work, Oma and Grammy have taken over care Tuesday to Thursday (I’ve got weekends), and Shea simply keeps smiling. Right now we are being good parents and following our orders leading up to a busy June where we will be seeing roughly 4 specialists along with our pediatrician, Dr. Mody. We started with an in house appointment with the Regional Center who will be helping track Shea’s development and making sure he is hitting his milestones. Second came Shea’s 4 month check up which went to plan as he received the standard vaccinations. And finally as part of follow up testing from our initial meeting with the genetic specialist, Dr. Bocian, Shea has been to a series of eye specialists as of late. Despite tracking well in all of his appointments, we have learned that Shea is far sided in one eye and near sided in another eye which will leave him doing his best Buddy Holly impression with glasses soon to come. The tougher item that has come up is that Shea has been diagnosed with macular atrophy in the paramacular location of his right eye. With little answers coming from the first specialist on what this all really means, we are in the works in attempting to find a second opinion. As we have for so much of this process, we keep enjoying the joy that Shea continues to bring us everyday. And if his actions could speak, Shea would be telling us that everything is going to be all good.

It has been 2 months now since surgery and our stay at CHOC. Life has changed and a new normal has become routine. But the one consistency throughout the entire process has been the love and support of our family and friends. We will never be able to repay all of you for the little acts of kindness that have made our days a whole lot easier.

A sincere thank you.

Erin, Pieter, and Shea

what are the odds

month one

One month since Shea’s surgery. Dang…

Our baby is 3 1/2 months old and he has endured brain surgery, MRIs, multiple ultra sounds, drawn blood, genetic testing, countless appointments, and a tongue clipping. The hardest part of it all is knowing that this is just the beginning. Like mentioned in previous posts, this is simply our new normal. However like anything in life, it’s so easy to allow challenges to distract what is right in front of us: life…. And life is good. Our little dude cannot stop smiling, laughing, eating, and growing. We were fortunate to spend some time in Newprot Beach staying right on the sand at 43rd Street. Shea did so well eating and sleeping I think he was trying to tell us oceanfront or bust!… We’ve got some work to do. At the end of the day, we get to be parents and fall head over heals over our child and we could not feel more lucky. Like I said, life is good.

Today marked our one month checkup with our neurosurgeon Dr Muhonen. Nothing you ever want in life unless you are an employee, but dang we know our way around those St Joes and CHOC parking lots… Our appointment begins with Shea simply laughing and smiling on the hospital bed for 15 minutes. Shea has given us no reason for concern leading into the appointment and our doctor confirms this speculation with an ultra sound. His ventricles and fluid levels are continuing to progress to appropriate levels. We get to leave the same way we arrived, smiling with our son.

It is Erin and I’s belief that you should never build walls around life. Experiencing new people, places, and ways of life only helps us gain a more well rounded perspective of how we go about making decisions on a day to day level. One very tough topic discussed in our appointment was travel with Shea. Something that was brought up right away by our Doctor was shunt failure while traveling. Obviously not an ideal situation, but given Shea’s unique condition we will need to always work into our plans a worst case scenario and how close we would be to reputable help. To put this into perspective one of the first places mentioned as not a great place to travel: Hawaii. Not everyone needs to be a world traveler. But to think that one day Shea could be restricted on what he gets to experience in life because of his condition is hard to swallow. Everyday we learn something new.

We have said this before, but Erin and I continue to be blown away by the generosity of our friends and family. And again I want to issue a sincere thank you to each and everyone of you. We could not do this without you.

Life. Is. Good.

The Berger Family

month one

shunt life

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It’s wild to think that a week ago we were in the PICU and now we’re home, trying to settle back into routine. I think the mental and physical exhaustion has finally caught up with us. However we are inspired to push forward through each act of kindness. This tired mama is particularly grateful for your meals right about now!

Shea had a great weekend consisting of laughing out loud for the first time and removing his bandage. Thank you auntie Amanda for coming to the rescue for this! Pieter and I weren’t terribly excited (as you can imagine) about the idea that we had to remove it ourselves and see what damage was done. Grateful for friends who are more like family, and in this case one who happens to be surgical RN.

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We had our first follow up with Dr. Muhonen and Shea is looking good! He had another ultrasound done which showed that the fluid is being drained and on its way to being at the appropriate levels which is all we can ask for. The doctor brought up several important reminders for us as we establish our new normal on how to best care for our little man.

The most important reminder is the understanding of how critical the 3 weeks following surgery are in looking for signs of of infection (internally and externally). Internally a major sign of shunt failure is a fever. In order to determine the fever’s source, the doctor would have to tap into the fluid (=needle+Shea’s head). That said, we are doing our best to stay away from large crowds and of course keep up the hand hygiene. This will get better once we get past the next few weeks, but will always be on our radar. Externally, the surgical site is at risk of infection. The doctor was quick to mention an increased risk of this if exposed to pets (i.e. petting a dog then touching Shea or dog licking his wound). I think it’s safe to say Pieter and I will hold off on getting a dog anytime in the near future!

Dr. Muhonen educated us on how the shunt operates in our baby’s head. The shunt flow rates are controlled externally through a magnetic dial that simply is applied externally over Shea’s head… Incredible. The one complication on day to day life is keeping our little man free of magnetic fields and therefore free of adjusting his shunts flow rate by accident. Our doctor was quick to explain that ipad cases are becomeing an issue here as most iPad cases are magnetically controlled. Many mothers will hold their baby with a shunt and read from an iPad not realizing what is actually occurring. All fun items to look after.

Overall, looking at the big picture, Shea is thriving. He seems happier than ever, which could very well be the truth after relieving some pressure! We await the follow up testing ordered by the genetic specialist but as for the neurosurgeon we better not see him again until next months follow up appointment!

Love and hugs,

Erin, Pieter and Shea

 

shunt life